We did not know that our schizophrenic daughter January Schofield's imaginary friends were hallucinations

By the time January Schofield was diagnosed with schizophrenia aged six, she
was a danger to herself and others. Her family say their ordeal is far from
over as they learn to live with an illness that is 20 times more severe when
it afflicts children

January Schofield, aged 10, and Michael Schofield near their home in Valencia, CaliforniaPhoto: DAN TUFFS

January Schofield twisted her head and sank her teeth into her father’s chin. This was her only means of attack – he was holding her arms and legs down. January had tried hitting her newborn brother, Bodhi, again.

“I have to hurt him,” she said matter-of-factly as her father, Michael, struggled to restrain her. “I’m going to hurt him.”

His five-year-old daughter looked “like a wild animal attached to my chin”. He released his grip and she dug her fingernails into his face. Seconds later, the volcanic rage had passed, ending as abruptly as it had begun. Jani, as she likes to be called, announced she was hungry and wanted macaroni cheese.

“It didn’t feel like it was her,” Michael, an English lecturer at California State University, Northridge, recalls of the hellish episodes that started around his son’s birth in December 2007. “It felt like something was taking control of her. I remember describing it to people as being like The Exorcist because of the suddenness of it and the severity. Jani would be kicking me, hurting me, and I remember thinking, 'This has to be hurting her because it’s her bare feet, it’s her toes’, and she was not reacting.”

Jani had always been different. Precociously intelligent, she knew the alphabet by 13 months and, at a year and a half, spoke in grammatically correct sentences. By three, she was quizzing her parents on the Periodic Table. At four, tests revealed an IQ of 146 and an estimated mental age of between 10 and 11. She required constant stimulation and had few friends, preferring the company of a cast of imaginary rats, cats, dogs and little girls. She also hated to be called by her real name, insisting on nicknames such as Blue-Eyed Tree Frog or Rainbow.

But the violence was new. This was not the daughter Michael recognised, the little girl who would ask him to fish drowning bees from the swimming pool. Now the family lived in fear of the 15-minute bouts of “pure fury” that came numerous times each day – usually triggered by Bodhi’s crying – terrified that Jani would hurt, or even kill, her brother. “It was like being thrown into combat,” says Michael. “Yet I still wasn’t ready to face up to the fact that something was really wrong.”

We meet at the family’s home in Valencia, about 40 miles north of Los Angeles. It is cosy and lived-in, with toys strewn across the floor. With Jani and Bodhi at school, the flat is peaceful. We sit down at the kitchen table and Michael and his wife, Susan, relate the story of their daughter. Susan, 43, a former radio and news reporter, is animated and full of energy. Michael, 37, who looks a little weary, is articulate and passionate. We are here to talk about Michael’s book, January First, a terrifying account of his battle to save his daughter, published in Britain next month. Before I know it, five hours have passed.

“Fundamentally, I wrote the book to try and make sense of what had happened to Jani, to us, to our family,” he says. “It was a way of processing and putting myself back together.”

As the situation became increasingly desperate, the family sought the advice of a psychologist who, alarmed by Jani’s outbursts, referred them to a psychiatrist. So ensued an arduous and harrowing journey to identify the “enemy”, as Michael came to refer to Jani’s condition.

Endless doctor’s visits, huge doses of powerful medications and traumatic hospitalisations eventually led to the awful diagnosis her parents had never let themselves believe: the Schofields were losing their daughter to schizophrenia, and nobody knew how – or even if – they could bring her back.

While schizophrenia, which affects about one in 100 people at some point in their lives, is disturbing in adults, it is “20 to 30 times more severe” in children, according to Dr Nitin Gogtay, a psychiatrist working on a long-term study into child-onset schizophrenia by America’s National Institute of Mental Health (NIMH).

“With the typical child that comes to us, it’s not surprising to see them actively hallucinating 95 per cent of the time they are awake,” says Dr Gogtay (who has not treated Jani). Most of their hallucinations tend to be “intense and frightening”, with voices telling them to do “violent and gory” things. “For a little child, that is extraordinarily scary.”

Still, it is incredibly rare – the NIMH study, begun in 1990, has to date identified only 130 children under 13 with the condition. It is also hard to treat. Most of the antipsychotics that work in adults, allowing them to have periods without illness, do not work in children. “It’s a devastating illness,” says Dr Gogtay. “It’s extraordinarily hard to see these kids suffer. I don’t think I’ve seen anything more severe in any aspect of medicine.”

Jani, who is now 10, is one of the youngest people in the US to be diagnosed. She was six when doctors at the Resnick Neuropsychiatric Hospital at the University of California Los Angeles told her parents they had “ruled out everything but child-onset schizophrenia”. Earlier theories had included Asperger’s, autism, biopolar disorder, OCD, ADHD and extreme anxiety. “By that point, schizophrenia was the 800lb gorilla in the room nobody would mention,” says Michael.

Until then, he had wanted to believe their daughter’s behaviour was due to her advanced mental age, a type of “early teenage rebellion”. “I was still clinging to the idea that Jani was like Stephen Hawking in the body of a five-year-old; that we just needed to find a psychologist who could work with her and she would be fine. Mental illness didn’t even cross my mind.”

The first of Jani’s several hundred imaginary friends, a dog called Low, appeared just before her third birthday. “We just didn’t really think about it,” Michael says. “But it began to get weird with the sheer number. It wasn’t just one or two; they were growing exponentially. By the time she was four, I couldn’t keep track of them all.”

All lived in a place Jani called “Calalini”, a desert island she describes as being “on the border of my world and your world”. Some were simple playmates – a girl called 24 Hours and Midnight the cat. Others, like 400 the cat and Wednesday the rat, ordered Jani to hurt or scream at people, jump from buildings and attack Bodhi. She said they would “scratch and bite” her if she didn’t.

“It really wasn’t until she got violent that we found out that she could not control it,” says Susan. “We were like, 'just tell them to stop’. We were treating them like imaginary friends. We did not know they were hallucinations and had a mind of their own.”

As Jani’s behaviour went from “rude and withdrawn” to dangerous, her father realised he had become terrified of his own daughter. He describes how Jani, who had always loved animals, would try to beat the family’s dog, Honey, chasing her and calling her name in a voice that sounded like Jack Nicholson’s character in The Shining. One evening she tried to choke herself with the sleeves of her shirt. On Christmas Day 2008, at the age of six, she attempted to throw herself from her bedroom window, saying she needed to “get away”.

Meanwhile Jani was being prescribed adult doses of powerful antipsychotics, most of which had no effect; her psychiatrist described Jani as having “the highest resistance to medication of anyone I have ever treated”.

By then, her parents had started checking her into psychiatric hospitals. She was the youngest patient by far but, to the Schofields’ alarm, seemed almost at home. “That was the first time I really knew it was what it was,” recalls Susan. “Because she was saying, 'They get my imagination’, and we were on a psychiatric ward, with girls who were bipolar or otherwise mentally ill, and I’m thinking, 'Oh my God’.”

The initial hospital stays – at the only facilities the family’s health insurance would cover – were of little help, leading to no change in Jani’s treatment or diagnosis. Some staff suggested that all Jani needed was stricter discipline.

In early 2009, Jani went berserk at school, trying to hurl herself through windows and doors. Michael arrived to find her locked in an emptied office with a district psychologist. He told the stunned headmistress to call the police. Jani was taken to UCLA, where she was placed under an involuntary psychiatric hold, a law used to confine mentally ill people deemed a danger to themselves or others, and admitted to the psychiatric unit.

When she was finally diagnosed a few weeks later, Michael was hit with the crippling realisation that there was “no cure. It was stronger than I am, and it had more power over Jani than I did.”

Even as the doctors scrambled to find a combination of drugs to control her symptoms, Jani seemed to be getting worse, attacking fellow patients and beating herself in the head. She was hallucinating nearly all of the time and barely interacting with the real world. Doctors warned that she had “a 50 per cent chance of getting better and a 50 per cent chance of getting worse”.

Michael became convinced Jani would soon be “gone forever”. One night he visited her at UCLA and, for the first time, she did not recognise him. “I thought she was going to slip into her world and not come back,” he recalls. “And I thought, when she died, I would go too. I’ve heard people refer to schizophrenia as going down the rabbit hole – it’s a fairly common phrase among families who have a loved one with schizophrenia.”

What saved the family was deciding to live separately, moving into two apartments – one for Jani and one for Bodhi – so Jani would be less likely to try to hurt her brother. The parents swapped places every night. Jani’s apartment was modelled on the UCLA ward, with a whiteboard listing her schedule and the “staff member” (parent) taking care of her that day. The unconventional arrangement worked: without Bodhi, Jani no longer had to fight with the voices telling her to hurt him. She became calmer and more relaxed.

Today, Jani is largely stable, thanks to a cocktail of drugs that include clozapine, a “last-resort” antipsychotic used in children with schizophrenia who do not respond to other drugs. Michael says it’s not known why, but older classes of antipsychotics work better in children than newer drugs. “The trade-off is their little bodies can’t deal with it. So you’re faced with a choice: you either poison the body to save the mind, or you let the mind go to save the body. You’re always walking that tightrope.”

In the autumn of 2011, the family moved back into one apartment. Now Jani is able to tell her parents when she needs extra medication. “We haven’t had any of the violence I describe in the book for years,” says Michael, “but she’ll sometimes get a little punchy, a little kicky, then she’ll say, 'I’m psychotic, I need an extra Thorazine’. ”

Dr Mark DeAntonio, clinical professor of psychiatry and medical director of the Inpatient Child and Adolescent Service at UCLA, says Jani’s prognosis remains “guarded” because, even with medication, the schizophrenia affects all aspects of her functioning. She is likely to require drugs to control the psychotic symptoms for the rest of her life.

Jani has not been readmitted to UCLA since February 2012 – that was also the last time she expressed a desire to die (she said she wanted to jump from a fourth-floor window, “because I have schizophrenia”). Since then, she has been doing well and, as long as her daily life remains “high-structure, low-stress”, she is able to function. She attends school and is taught in a special class along with other “severely emotionally disturbed” children, has horse therapy, and drumming and swimming lessons. She also has weekly sessions with her psychiatrist and psychologist.

Later in the day, Jani arrives home from school. She has tangled blonde ringlets, wears jeans and a bright pink coat, and doesn’t stop moving, punctuating much of what she says by rubbing her wrists together. “We have a cat,” she says, after I introduce myself. “She’s called Midnight. I think she’s hiding under the bed.”

She indicates a mattress in the living room where her brother is playing on the floor; the Schofields have two dogs but no cat. Then she goes to her bedroom and shows me her two fish and the 13 turtles housed in large gurgling tanks surrounding her bed.

There are posters of horses on her wall – she loves animals and wants to be a vet. “Do you want to see what else I love?” Jani asks. She pulls out a torn poster of the band Blink 182 and points to the drummer. “Travis Barker.”

No one knows what causes schizophrenia but genetics could play a role. Susan’s great-uncle was diagnosed schizophrenic and Michael’s mother was delusional and disturbed.

Bodhi, now five, has been diagnosed with autism, but Susan says it remains a possibility that he also has schizophrenia. “Either way,” she says, “we’re prepared.”

Michael finds the lack of public understanding of the condition frustrating. “The idea that there is an illness that can completely take over control of your actions, fundamentally alter who you are, and there’s not a damn thing you can do about it, terrifies people so much that they would rather believe in anything else – demonic possession, diet or that Jani’s just a brat and we are ineffective parents.”

Publicising the family’s story has put them in touch with others facing similar challenges. But it has also resulted in criticism, some of it from those who do not believe in mental illness and doubt the existence of child-onset schizophrenia. “There are still people who don’t believe what I wrote about Jani’s violence, that I was exaggerating.”

Diagnosis for schizophrenia in Britain is different. “We have never come across a case of someone diagnosed at such a young age,” says Paul Jenkins, CEO of the charity Rethink Mental Illness. “Although some parents of children with schizophrenia have told us they noticed unusual behaviour in their children at an early age, for many there are no warning signs at all, which can make a first episode of psychosis even more distressing.

“Most people first start showing signs in their late teens or early twenties, and psychiatrists are reluctant to diagnose schizophrenia, especially in young people. We support this caution, partly due to the stigma that surrounds the illness, but also because many young people who experience a psychotic episode will recover and never become ill again.”

Michael acknowledges that, while life is much better, he worries what will happen when Jani turns 18 and they no longer have any legal say in whether she takes her medication. They also fear for her future after they die. While people are fascinated by his daughter now “because she is young and cute”, no one will “give a ---- in 20 years when Jani’s a homeless dirty old bag lady on the street.

“It’s very frightening when you have a child who cannot take care of themselves without assistance,” he continues. “I can’t go to my grave unless I know that Jani, and other kids like her, are going to be safe.”